Help on the Line

[MUSIC] You're stepping into the persistence lab. [MUSIC] For many patients, a diagnosis isn't the end of the story. It's the beginning of another challenge, trying to make sense of the healthcare system. Getting medication sounds like a simple step-by-step process, but the reality is very different. Insurance forms, coverage questions, and reimbursement approvals can make the maze feel endless. Patients around the world face their own patchwork of complex medical care systems, different rules, different barriers, but the overwhelming feeling of being left on their own is universal. [MUSIC] Hi, I'm Kira Deneen. Welcome to the persistence lab, where we pull back the curtain on the grit, the setbacks, and the breakthroughs behind healthcare innovation. And today, we'll follow a patient's care journey through the healthcare system, as well as the resources and systems designed to help. And we'll ask, how do we make sure patients don't get lost in the complexity? Many of us know or have been a patient at some point in our lives. Sometimes the diagnosis feels manageable, but other times, it can be significant and impactful to all aspects of your life. And that can be a lot to manage, especially when it's your own health, or the health of a loved one. It's personal. If you think about the journey the patient has been on by the time they get to us. These are patients who have either been newly diagnosed with an illness, and they've climbed a hill to get to that diagnosis, or they've already been diagnosed, and their treatment may be failing them, and now they have to switch to another therapy. They believe that it's a matter of taking that prescription to their pharmacy, and a little that they know that the journey is just starting. And there are hurdles and obstacles in their way that they need to overcome, including a whole bunch of paperwork that they need to fill out, navigating a system that they do not understand most of the time. That's Anna Jar, Vice President Abbey Complete Access. A pharmacist by training Anne has more than 20 years of experience in the industry, touching everything from supply chain and manufacturing to patient services. There's no handbook, and there's no quick start guide, and there's no map that goes here. Step one, step two, step three, and patients often come to us telling us they just have no clue what's happening, or why they can't get their medicine. And while the US is definitely a prime example of where that is prevalent, it exists in many different forms around the world in different countries. So it's not just for US patients. It's also a global issue that we struggle with. Those hurdles can become overwhelming really quickly, especially when a patient has just received a potentially life-changing diagnosis. And that's something Lisa Pyser, Vice President, Abbey Patient Services, sees frequently for patients in the US. I had an experience with my daughter, and before she even got to diagnosis, she had to move through two or three different specialists, get a myriad of tests, both invasive and blood work, and finally getting to that diagnosis was just like, "Oh, it was such a game changer." But then we realized that there was some prior authorization criteria. Some of the administrative burden where the insurance company is basically asking the question, "Does this patient qualify to be on the medication?" And there's a good reason that those questions are asked, but often it infuses more time into the process, frustration for somebody who doesn't know how to answer those questions, and a lot of back and forth with either your doctor or your insurance company. So then you've cleared that hurdle. Your medication is approved, and then you have to ask, "Can I afford this?" And so for many patients in the healthcare system, even with great insurance coverage out of pocket costs, can be exceedingly hard for many families to handle. And so that's an area where biopharma companies have really leaned in to offer different solutions. But part of my job and the job of my team is to make sure patients are aware of those solutions. Not every medication out there is you go to your local radiate or Walgreens to pick up your med. Some of our medications are specialty medications that require a specialty pharmacy to actually ship the medication to your home. As you might know, some patients don't even have access to pharmacies. There's a pharmacy desert out there right now. So all of these challenges exist in the system, and it's something we're very aware of. And it's not just people that maybe don't have experience in medicine and science as a healthcare provider myself. I find it's challenging to navigate, and I have degrees in this. What makes navigating the US healthcare system so difficult? I think the healthcare system, especially in the United States, is very fragmented. And so you have different stakeholders in the system. You obviously have your physician offices. You have insurance companies. There's a group that sometimes get referred to as the middle men, which are pharmacy benefit managers or PBMs, your specialty pharmacists, your distribution hubs. And so there's different parties that are in the system and they each own a piece of the prescription process and the fulfillment process. And there's many different insurance companies. And within each one of the insurance companies, they're offering thousands of different plans in which the steps of getting coverage and the time to get approval very greatly. Could you give me an example of what that looks like? So our patient would come in, you'd investigate their benefits, and most of the time there's a prior authorization required. There's tens of thousands of prior authorization forms out there, dependent on plan, on coverage type, on insurance, etc., etc. So you've got to find the right form. Okay, that's step one in the hurdle. You have to have your physician fill out the form. You need to fill out the form. And then there's a process of approvals and appeals and whatnot and so forth, which basically means that every patient case that comes through the door is different. And each one of their journeys is going to look significantly different than the other one. Based on a whole set of different circumstances, so then you have to say, okay, in an ecosystem like this, how do we work with the complexities and make sure we can mitigate and remove as many barriers as we possibly can for patients? Really, we want to make sure that we can open up the channels where patients can ask questions, we can support them and help them navigate. That makes sense. These experiences and challenges with trying to access medication can bring up a lot of different feelings for patients. Depacions have a reach out to you directly to share their positive or negative experiences. And Carol, we have so many. Yes, I can imagine there's so many letters in my office. I'll tell you because they come directly to me, but like they're written down on paper. Amazing. I can see it on camera right now. That's amazing. Yeah. And this is really long, right? You see, oh, front and back. We're talking. Yes, handwritten. Front and back. And this one I keep in my office and I keep it in a laminated folder because I share it with a lot of folks who come and visit us. This patient really stuck with me. It's a Crohn's disease patient. For our audience, Crohn's disease is a chronic inflammatory bowel disease, an autoimmune condition that causes inflammation in the digestive tract. But there's no cure. And scientists haven't yet learned what specifically triggers the condition. But for people with the disease, it can be an extreme source of distress and impact on their everyday life. He goes, I don't know where to send this to, but I want to send it somewhere. And he said, I was a sophomore in high school about to be done for the year. And me and my best friend were just driving around. The feeling just hit me right out of the blue and bam, I used the bathroom all over myself. I remember how ashamed I was. The embarrassment that followed and the disgust that anyone who noticed would try to hide. And then he continues into talking about his football career. He got a football scholarship to go to college. And he said, football was my passion all throughout my life. And once I had it taken away from me, I never felt the same. He couldn't get his scholarship because he dropped 40 pounds over the course of high school because of his disease. Wow. But he says, there's so much I can write to say how much I am grateful for you. Thank you. So this is just one. One of so many incredible letters we got. It's incredible to see what impact you can have on someone's life that you do not know and have never met. On the flip side, we receive letters and feedback on frustrations and asking for help. Not only do you have to get that first prescription approved, but another complexity of our system is there's usually some sort of prior authorization for refill or renewal. And so we make sure that we're there every step of the way on on the journey. We call it life happens moments where these things your insurance may change, your employer may change. You may need another prior authorization. And so in this case, we have field teams that are access specialists so they can help triage patient cases and they identify where there's missing paperwork, where there may be a form that needed to be completed and educate the office to help patients get their paperwork completed in a timely manner and in a way that is supportive of the prior authorization criteria so the patient can start on medication. But the goal isn't solely to explain policies or paperwork. It's to balance empathy with bureaucracy. Making sure patients feel safe. and know that they have someone that they can rely on to help navigate a system that often feels designed to shut them out. That's the idea behind the programs AvV has in place for patients. We call them patient support programs, and we have branded our program the complete program, and again, it's a nod to the fact that we provide complete services from the time of prescription choice until that patient's able to start on therapy and go through their refills and all those life happens moments. The complete program is offered to patients within the United States. We are a global company, and so there's a similar program outside the US. And I would say almost every one of our medications offer some element of the complete program. Depending on the medication we have, insurance specialist support, nursing support, we have nurses that actually will go to a patient's home when they're ready to do that first injection, and they do injection training with the patient, and then obviously copay affordability support, and then ongoing touch points through our email support, our education support, and our nurses. And so that's like a holistic robust care model. Our goal when we think about our complete programs is to really first of all understand the patient journey. AvV invested a whole ton of time and effort and energy in understanding the patient journey. We have outlined step by step the process by which the patient has to go through to get diagnosed and afterwards to get coverage and to pick up their script and prescription and to start on therapy. And that helped us uncover where are these obstacles that are going to get in the way? Where are the barriers that are gonna stop the patient from going from point A to point B to point C? And then as a result of that, building programs to basically target these obstacles, we wanted to make sure we have our employees supporting our patients directly to navigate the ever changing access landscape. And we have a bunch of other programs. We have programs that offer savings cards to help patients with their out of pocket responsibility. We have our patient assistance program that's near and dear to my heart. That's the program that offers free of charge medicine to the uninsured and underinsured patients and low-income individuals around the US. The programs were started not out of the blue but out of a true deep understanding of where are those needs from a patient perspective and how can we step in to help carry them through, support them through and help them navigate this unknown part of their life? That's so helpful to take it from a workflow perspective and identify the pain points and develop the programs, targeting those obstacles. We've been talking a lot about the experience in the US but Abbe's footprint is global. When you look at patient journeys around the world, what similarities or differences stand out? Do patients in other countries face their own unique access challenges? Every single country that our global team support are unique and I think in many cases, you don't see as many of the access challenges globally because of some of the more socialized medicine that exists outside the US. But you see the same struggles as it relates to educational gaps, health literacy, affordability in many cases. So they're working through some of the same challenges and maybe in many cases have a harder job because not only do you have every patient journey as unique but every country globally is very unique and has their own set of circumstances and complexity. So we spent a good chunk of time in each one of the markets working with the local people there and the experts locally to define what that journey is because maybe access is not the issue. Maybe the issue is getting in to see a specialist in time and then taking really good lessons from programs we built in the US, whether replicate, customize and we call it localize, localize based on the obstacles that exist in that country. We built the programs in 45 different markets and every program is tailored. It's not only tailored per country, it's tailored to the product and the disease state that it supports and in some programs there are a lot of nursing support for example if there's a ton of support needed from a disease perspective or even if the product is slightly more complex and in some instances it's about education and it's about getting patients the resources that they need to help themselves. So once you mapped out those different needs what kind of problems did you find in the patient journey that you were able to build solutions around? We looked at a product that wasn't super complicated it was a pill and you would imagine like people take pills all the time, right? That's not a big problem. But it is because adherence to pills is really low and pharmacists by training and we know that's like we know adherence is a big issue but we didn't realize how big it was and we said okay what do we do? And we did something really different. We had a behavioral psychologist come and talk to us about what's a really good way to form habits and we built a program for patients to say guys when you start this I think this really helped you get the most out of your medicine if you form a really good habit of taking your medicine and by the way you can use this variety of different parts of your life. It was developed with patients and every time we think about a new medication coming to market that's one of the first questions that are asked will be the underlying patient support program to make sure that once the prescription is written from the physician that that patient can start on products. There's always a question of well what does it mean from a patient perspective? And what we learned really quickly is the obstacles of getting the patient, the medicine that they meet in their hands are really tremendous, especially for people who are struggling with an illness and a world that they don't understand. Health systems are constantly changing. New policies, regulations and roadblocks can surface it anytime, making it harder for patients to get the treatment for their disease. And when things move fast, it's not just patients trying to keep up, it's the people supporting them too. That's why education is such a core part of this work. Helping every person involved in this process understand these changes and what they might mean for patients. When somebody is educated, they are empowered to make decisions about their own health, about their treatment choice. And so really we see education as a way to help improve health literacy and make sure that patients and providers and physicians are asking the right questions. And so that to me is when you are equipped with information and knowledge, that gives you more control, it gives you more power. It changes you from being overwhelmed and potentially paralyzed to taking action for your health. And so that's one of the areas that we've really leaned into is just this educational component, whether it's educating patients on their disease state and how to take their treatment. And also educating physicians on again, the complexities of the healthcare system and how their particular office can support their patients. What do they know? What don't they know? Do they have the right tools and support to help navigate the prior authorization to understand the utilization management criteria to know that this health plan is different than this health plan. And these insurances are different. We take that education component very seriously. And we also make sure that we continue to upskill our team members so that they're staying on the forefront of the evolving healthcare landscape and they understand the changes too. And I can see that the heart of healthcare experiences our relationships. So how do you build trust with patients? I think you hit the nail on the head in terms of the word of trust, right? Because I think without trust, a patient or a provider may doubt the information or knowledge we're providing. And so we do take the relationship piece of it very seriously. It's really interesting in the world that we live in right now. There is so much data and information coming at all of us from all different angles. But there's data out there that say nearly 70% of patients believe they can judge health information as well as their providers. And 35% saying the average person can be as knowledgeable as a doctor. So when you're in that backdrop where patients are flooded with information, they think they're pretty well educated. We need to make sure that we develop that trusting relationship where we can educate, where we can course correct as necessary, where we can equip patients with the right questions to ask their doctor so that they can have a very productive conversation with their physician. And so we do a lot of education and training for our teams to say, how do you quickly make that connection? How do you quickly earn the trust and share the relevant information for that patient? Again, knowing that our attention spans are so great anymore. And we're in this fast paced world where we want to get on to the next task. So these trends that you're seeing with a lot of information, misinformation, we have to be even more vigilant and resilient and making sure that we are sharing accurate education and again, really empowering our team members and our patients with the right information to have those conversations. And that idea of meeting patients where they are really gets it how fast things are changing. We've talked about how different healthcare systems look today compared to even a few years ago and it's still shifting. As you look ahead, how do you see the patient experience evolving and where does Abbe's approach need to keep adapting, especially here in the US. - I think you will see continuous changes in what I'll call the access landscape. So that includes insurance plans, PBMs, specialty pharmacies, probably more administrative burden, more questions, more utilization management. And then I like to think about the other areas, like we have to meet the patients where they want to be, right? And so, gone are the days where patients want to be spending 20, 30 minutes on a phone with a nurse. We have to meet the patients where they are within their busy lives. And so I think some of the technology advances and the data is going to be a game changer for us on how we can interact with patients and really intersect within their life in a way that doesn't seem intrusive, but it is amplifying either their knowledge and their background and their education, or reducing any of those pain points along their journey. So we're constantly scanning the horizon for technology, touching base with our patients through research on, how do you want us to communicate with you? What's working? What's not working? Where is there a gap? - It sounds like so much of this comes down to sticking with it, adapting as things change and supporting patients through every twist and turn. When you think about persistence, what does that look like to you? There's maybe a dual meeting for me. So there's the clinical definition of persistence, which means looking at a patient outcome and how they can continue to take their therapy as long as needed, as prescribed by their physician and persist on therapy. I also think when you think of somebody being persistent, you are continuing to do something that you believe is important, that is inspiring to you, that can truly be life changing in the best way. And so we cannot just depend on luck, right, or happenstance. We have to be very intentional with the programs that we design and very intentional with the support that we provide to patients. As Lisa said, access to treatment should not depend on locker persistence. Every patient deserves to feel supported and to engage with health systems that are supportive from the very start. That's the future of you is working towards. A system built not just on transactions, but on connection, empathy, and care. Because when patients feel seen and supported by systems that are designed to help them improve their quality of life, that's when real progress can truly begin. - I really appreciate your time. And please thank every single person that was in the chain of communication yesterday. There was a very dedicated group of people and they really did an excellent job and explaining only how to where we were. I've always been well satisfied with your nurse ambassador. This call that I made today, 90% of the students, I just was ever in my life in church, rest, and my entire life was the medical profession. Showing so many things that me at once is unfortunate. And she just helped me with some ideas and that some of the other things, you know, I spoke with her. I mean, we're not all medical people. And there's a lot of terminology in getting the petitions to throw you. Thank you. - There are individuals who are struggling with an illness, unknowns behind an illness. So they don't know what their days kind of look like. Now they have to figure out the unknowns behind getting the one thing that their doctor told them can help them. So imagine the level of frustration. And that's why I believe the work we do is so important because behind every call, every form, every email, there's a real person, that person has family, friends, a job, plans, probably vacations, and a whole life to live. And we will do everything in our power to get them back to that life as soon as possible. Persistence doesn't just live in the lab. It lives in patients who won't give up on their care. And in the people who show up day after day to help guide patients through moments, they were never meant to face alone. It's that persistence from individuals like Lisa and Ann, from patients and from advocates that quietly moves healthcare forward. And it's how better access becomes possible. One patient at a time. Thanks for joining us inside the persistence lab. If today's conversation gave you something to think about, we'd love for you to follow the show and share it with someone who cares about where science is headed. Don't forget to leave a rating and review. It helps others discover the work happening behind the scenes. I'll meet you back here next time with another story that'll bring you a little closer to the people pushing medicine forward.